Having hospice care to help out when her 43-year-old husband Charles
was dying was the difference between "flying blind and flying
with radar," says Joyce Kirk. Joyce and Charles had been married
22 years when they discovered he had liver cancer and probably
wouldn't last out the year. They had two teenage children and
Joyce says neither she nor her husband had given much thought
to how they would handle a terminal illness. Charles' physicians
hadn't been much help.

Joyce lives in Reston, Virginia, and a nurse she knew told her
about the Hospice of Northern Virginia. The year was 1983 and
Joyce had never heard of hospice. Her friend told her it was a
program that addresses the needs of persons with a terminal illness.
Joyce liked the idea that choosing hospice care would enable her
to keep Charles at home and be cared for by his family. Making
the phone call was difficult for her, however. "It was a defining
moment. I was going public and saying 'My husband is on the road
to death.' "

A Safety Net

As soon as Joyce made the call, the hospice began working with
her to help meet her needs. They assessed her insurance coverage
to see what benefits would be paid for and talked with Charles'
physician. Three days later, a nurse visited the home and took
over. "Suddenly, it wasn't only my responsibility anymore," says
Joyce. "There was someone who understood exactly what we were
facing."

As soon as the nurse arrived, she took an oral history from Joyce
and Charles, got acquainted with the family, and began to create
a plan of care. "We felt like we suddenly had a safety net, both
practically and psychologically."

The hospice staff was there for any support; this included a
nurse, a social worker, and a volunteer. The nurse came at least
once a week. Sometimes, she would stop by on her way home. The
hospice got a more comfortable hospital bed for Charles when he
needed it; they brought in a bedside commode; and they even were
willing to drive Joyce's daughter to the dentist to get her wisdom
teeth out.

Sharing the Sadness

Having someone ready to bend an ear was a great comfort for Joyce
as she tried to cope with her grief. As a Minnesotan of Scandinavian
heritage, Joyce maintained a stiff upper lip for fear of upsetting
her husband and her children. She was very close to her husband
but she was having a hard time sharing her feelings about his
illness and his inevitable death. Joyce started to pull away from
Charles to protect herself from the pain she would feel when he
died. It was the hospice nurse who urged Joyce to let Charles
know her feelings. "She was the one who said 'It is important
for you to be strong and do what you need to do, but it is also
important to let him know how sad you are.' " Joyce says those
words allowed her to feel the pain of losing her husband and friend;
she allowed herself to cry more openly.

The other thing the hospice offered her was guidance. Joyce appreciated
knowing that she could call on the hospice to find out what to
expect next with her husband's illness; they could tell her what
symptoms to look for and whether he would be in pain.

Charles Kirk died in August of 1983, six months after he was
diagnosed with liver cancer. He died at home in the middle of
the night with Joyce by his side. "It was quite a beautiful moment
and removed the fear of dying for me," she says. She called her
minister and the hospice nurse, who was there in 15 minutes. They
helped her tell her son and daughter that their father had passed
away.

A Concept of Care

It's been 14 years since Charles died. Joyce has since remarried,
but she has never lost contact with the hospice movement. With
her new husband, who is in the foreign service, Joyce has lived
in Hong Kong and Australia. During her years in those countries,
she volunteered for their hospice programs, working on fundraising,
helping out with grief programs, and writing newsletters. Upon
returning to the U.S., Joyce immediately hooked up with the Hospice
of Northern Virginia, where she is now in charge of volunteers.

Joyce acknowledges that there is a common misconception about
what hospice care is. She says it's important for people to realize
that it's a concept of care, not necessarily a place, when all
the curative measures have been exhausted. She says she can't
imagine what it would have been like not to have Charles at home
throughout his illness. When he did have to go to the hospital
for four days because of a fever, his children sat on the edge
of the bed and wouldn't look at him.

At home, Joyce says, his children never left his side. They brought
friends over to visit and had long talks with their father. Charles'
friends also visited from all over the world to say goodbye. When
Charles couldn't sleep because he was in discomfort, the family
would keep him company and sit around the kitchen table at two
in the morning, eating peach pies Joyce made for her husband.
To this day, Joyce says, she makes a peach pie every August 8,
the day Charles died.